Freedom

I think I blogged about Camp No limits we went to in Janurary.  Cav was able to try out a set of running blades there and in typical Cav fashion he was running on his own in 3 passes.  

HE LOVED THEM!!

Unfortunately they are $20,000 A PIECE.

And insurance deems them cosmetic.

I don't care whether we are adopting again or not, I just can't justify $40,000 for running blades.

Anyhow, Colorado offers a running clinic through Hangar prosthetics

we went last year.

It was great but almost everyone there has a "good leg"

blah, blah, push off with your good leg etc.

In addition, if they were bilateral, they had their own knees.

It was frustrating for him, and for me.

With Cav's history he WANTS to run, 

BEING AN AMPUTEE doesn't make Cav different,

His inability to RUN makes him different.

When the people from Hangar called this year I told them flat out, 

I couldn't subject Cav to knowing he can run with blades 

but us not being able to acquire a pair for him yet. 

(we missed the grant application which ended in Dec.)

The nicest woman - who puts on this event took it upon herself to beg, borrow and plead for a pair of running blades for Cav.

We went from a pair being donated, to the only pediatric pair were in Iceland?!?!

They finally were able to pull an adult pair (similar to what he had tried before) 

OFF the production line for him!!

When we arrived - they were waiting for him to rebuild his legs so he could also run.

Many said he couldn't because these were for 120 lb person and Cav is 48 lbs.

I told them to give him a chance.

He smiled,

He RAN,

He beamed!!

(we are praying that we can get him a pair in the next few months that are made for his weight.)

This sweet puppy is 5 mod old and Tao LOVED her!

Amputee Clinic + hands

Can you believe it - it has been a year since Cav had his surgery that ultimately led to his first steps.

Last week we had 3 appts - 2 hands and the amputee clinic all scheduled within an hour.  Talk about a JOKE - except it was on me.  What a mess.

We must have seen 20 people - someone in their infinite wisdom decided to put us in a room, and then jsut had the Dr's come to us - no schedule nothing.

ANYHOW, boys hands look great!!

Cav's will never be "normal" yeah not sure what I was thinking with that one.  He had splints made, as he now holds the hands inward in a very typical Radial club hand manner.  He will wear them at night in hopes it will straighten things out.

Tao's hands look fabulous.  You have to remember that the surgeon had to chisel away the extra bone and then attach the muscle.  His right thumb is appearing to act more like a finger.  We are not sure if this is something we will even consider fixing in the future (wouldn't at all except he is right handed).

That baby was SOOOO excited to take a shower.  It was ALL he talked about for the ENTIRE hour car ride home LOL!

Cav's amputee clinic.  I love clinic whether it is skeletal dysplasia or Amputee.  ALL of the specialists from the hospital a represented and they come up with a plan TOGETHER!!  What a novel idea -really the days of he said she said are hashed out in the room (albeit tiny room with 15 people crammed into it).

Cav has a odd new walk - we call if the hoopty walk.  He looks like a cross between a stork and a puppet.  We were thrilled to have everyone weigh in - adjust his leg length a tiny bit, and ultimately were told NOT to worry about it.  Of course he blew them away.  And truly when you remember how long this kid has walked - he is amazing.  EIGHT months, that's it.

Since we had a little time before our appts we also bought him some FLIP FLOPS!!  The kids have been waiting all year and we finally found some reefs at Nordstroms that still have the backstrap in his size!!

We also got to go down to the Gait clinic and have teh specialized video taken of him - it will help us remember how far he has come.

I almost forgot the most special moment.  Their was a girl about 10 that had a severely clubbed foot.  They asked Cav to show her how well he walked on his legs.  We answered their questions through a translator.

My heart broke when I saw her walk out slowly pushing her walker.  The one thing we were told before accepting Cav was that some kids go through years of surgery and ultimately choose to amputate as teens.  We were lucky in retrospect as there was nothing that could be done for Cav's shorter leg.  However, I sometimes wonder should we have tried harder on the longer leg?  Today I got my answer. I knew without a doubt we could not have subjected him to surgery after surgery.

Amputee video

This video is to awesome NOT to share -

It was created for the amputee victims from the Boston Marathon bombing but I think it shows so much more!

Boston - {amputations}

We live far away from the activities in Boston, but oh does my heart go out to the parents and families of the TWENTY people who are left as amputees.

I think because we didn't have a choice with Cav, 

because the only thing he wanted more than anything in the world was a pair of shoes,

we did not have the sense of loss that many if not all these people will be experiencing over the next weeks, months and years.

Cav never walked persay and so it is our guess he doesn't have that major feeling of loss.

He never knew what it felt like to get up and get dressed without that extra step of putting on his legs.

He never had the feeling of standing on ice and snow,

two legs that now require vision to make sure they are going where they should.

Extra socks for sweaty summer days

and prosthetics that are not fitting.

As we become more active in the amputee groups,

it is this overwhelming sense of loss 

and once again we feel like foreigners.

However, what Cav has

and we are slowly realizing

he will bestow upon the world,

is his go get um,

do anything personality.

For him, his legs are a gift.

They opened up a whole new world to him,

he knows what the alternative is,

and he is grateful for the technology.

As we pray for these twenty people,

and we see the amputee community rally around them.

We pray for their hearts and a peace for them.

Although we mourn for their hearts,

we pray they will get past this devastation,

and learn to fly.

Would you please pray along with us.

Growing

It's amazing what having a home can do for these kids. 

 Cav has grown 2 inches since OCTober, 

My husband had called me WHILE we were in China saying he couldn't get Cav's legs on

my solution was knee hi pantyhose

It was determined that he needed new legs 

I was frazzled from jsut getting home,

I jsut wanted to get through Christmas

I TOTALLY forgot about our DEDUCTIBLE

ugh

ANyhow, after several trips to Denver

a very high deductible

we got

NEW LEGS 

(this is so not how I perceived my life 10 years ago LOL!)

Oops one leg is shorter then the other!

Because Cav has one leg longer than the other - he also has more growth plates in his left leg - so . . . oh yeah it grows faster LOL!  

THey jsut added a little more hardware to his Roboleg to make them equal 

Hmmm and what am I supposed to do with jsut one leg LOL!

So the length on the left leg is the same as before but the socket (red part) is much bigger

THey had to make it shorter because he has some leg/cheek fat roll thing going on

Can you see how much bigger the red one is

THis leg is way bigger I was totally shocked

Also because I swear I am jsut out of it sometimes, 

Cav's shoes were almost completely worn down on the right side ?!?!  

Luckily, Brahm had some that fit perfectly!

And can I jsut say how stinking cute they came out!!

So, lets jsut pray that these legs fit for longer than 4 months as I am about beat!

Making Cav's legs

I thought waiting parents or those who are having their first prosthetic legs made would be interested in seeing the process of how they cast to make Cav's new prosthetic legs.

Wrap the prosthetic in saran wrap (I keep telling him NOT to buy the cheap stuff LOL!)

Cover the stump with a stocking and then climb a belt around the waist to keep it up

They use an awesome pen they soak in water to write on the stocking.  It transfers to the inside of the cast.  THey mark anatomical landmarks and a guide to which they measure.

 See the circle with the X on the left - because Cav stood on his Fibula he developed a thicker head on the bone which sticks out.  They know by this mark that the indent is bone.

They measure with calipers to help us keep track of how he is growing,

 Because Cav has the lower part of one leg he also has more growth plates.  We had noticed he looked like he was looking like he was almost dislocating a hip when he walked.  Yeah, duh, his longer leg had out grown the shorter by 3/8 of an inch LOL!  They will accomodate for this on his new leg.

THey use the old plaster casts to wrap the leg and make the mold.

We had thought they could jsut slip the cast off because Cav's calf had shrunk, we did not figure in the bit of a ridge he has at the back where they added on his heel ~ so cutting was in order lOL!

Finally, got it off and a quick clean up!

Both plaster casts finished.

They are rushing (story of our life) his new sockets because he is wearing on his scar and it keeps opening up ~ so we go back in a week for the test sockets, x-rays and have our ortho check everything out.

*** THank Stacia - forgot this part LOL!**  Those looking at files with kids who might become amputees don't fret.  Cav is NOT normal in his need for new legs already.  He received his first legs the beginning of Sept and then a new knee about 6 weeks later.  Now he is receiving new sockets jsut 4 months from the time his first pair were made.  MOST kids need their first sockets in 6-8 months due to shrinkage NOT growth and then about every year.  HOWEVER, if you remember Cav had severe and chronic Giardia when we got him, plus severe malnutrition (I jsut came across a picture that reminded me of the holocaust ugh).  We have worked very hard with medication and then homeopathic to get his gut to a normal status.  I believe the need for new legs jsut 4 months after the first is due to his gut finally normalizing enough so his body can absorb some of his food - along with his little hoarding binge during Oct-Dec.  The boy finally has a little meat on his bones and some of that weight went into his thighs.  Because he is considered weight bearing on both legs (basically he stands IN his prosthetics) they have to fit within millimeters (the width of the socks) so they can't handle such drastic growth.  Again Mr Terry said he had never seen a kid grow out of his prosthetics like Cav had ~ of course not LOL!

We are fortunate that our insurance is good and we are hoping that they will cover these legs minus our yearly deductible (duh that wasn't good planning on our part but luckily we have 2-3 surgeries this year so it'll be ok.)

We are ONLY replacing the sockets so they will take apart his old legs and reuse the knee (that is only 3 months old) and feet etc.

Amputee choices

So tomorrow we go to see Mr Terry - has it only been a month since we saw him and realized we needed to start on new legs - cuz frankly I feel like I have aged a year in that month.  Good and bad.

Have I ever mentioned I am NOT the most organized person in the world LOL!  So of course Sunday afternoon I realize I need fabric for Cav's new legs - do you know half of the fabric stores in town are closed on Sunday (and I knew I had no time on Monday.)

At first I thought oh what a fun family activity - then I realized how much the fabric ladies would hate me for traipsing my entourage into their fine little quilt store to look for fabric to cover my poor handicapped boys legs - heehee rolling - those blue haired ladies probably would have been talking about us for years LOL!

So I took the next best option and texted pictures to the family from the store.

Cav still really isn't "verbal" enough to make a decision - everything is um, yep.  So since we have to look at his legs, I let the other kids choose with the restriction that they had to be friendly for preschool AND Kindergarten just encase they last that long!

Loved the pandas but no else did

Loved the dragons but we thought we would wait a few years

No one liked crayons Ugh you people kill me

Then we saw the Dr Suess collect - FUN!!

            

Hmmm Dino's are cute!

I thought puppies were cute and daddy thought bones were perfect

BUT then we all agreed on!!

I am not sold on bright red legs but they will be cute for 4th of July LOL!

So what do you think?
We really wanted sharks but have not found any shark fabric anywhere - if you see some we would love 1/2 yard!!

And in all his cuteness
watching the Broncos win um lose
Griffen using Brahm's Globetrotter's ball as a footstool
(see those feet - yeah that's why you don't buy shoes to bring to China LOL!)

More Cav while we wait

I know I have other children LOL!

And we are waiting on our TA - which makes me want to sit and check the computer non-stop instead of the 1,000 things I need to do LOL!

We are yellow (this is the chart on chinaadopttalk under forums)

BUT this little - um big guy keeps us hopping!

This is how our day on Tues went

Leave the house at 7:30
8:15 - OT appt all the way down south
forgot the dang handicap sticker so run carrying his slow self to be remotely on time
call hubby to bring the sticker on his way to work.
Hubby arrives while OT is making splints for Cav's hands to help with the suspected carpal tunnel

9 am - leave OT an race back up north for our 10 am appt with prosthetist in Denver wishing we had a helicopter LOL!

10:15 - arrive - wishing I had, had time to stop for a coffee

10:15-11 - Mr Terry builds Cav's new legs, giving him a better knee and making him 1 3/4 in taller!

11-12 - Mr Terry teaches Cav how to use his new knee.  Shows me how to work it

Mr Terry - LOVES Cav and we LOVE him!!

His new KNEE!!  Gotta love the tool fabric on this leg LOL!

This knee is much beefier and he should have a more normal looking gait.  By touching his toe it bends then swings through.  He has a bad habit already of swinging his leg out to the side.  Also this leg set up will allow for him to run - we already seeing him much faster!!

12 - leave the prosthetist and promptly get lost on our way to Denver Children's for 1pm appt

1:05 - finally arrive, use Valet, see Mr Terry walking into Denver CHildren's and again run to our appt.

1:15 - Meet the hand surgeon recommended by the amputation Dr.  Well, first we met the fellow and medical student.  Show them Cav's funky hands, tell them he needs working thumbs to get his prosthetics legs on and off.

1:45 - Meet the actual hand surgeon and he takes about 2 minutes asking Cav - can you do this, how about this.  Light bulbs start flashing over everyones head as we see him try to lift his thumb away from his palm without using his fingers.

1:50 - Diagnosed with mild Radial Longitudinal Deficiency - if you think of the arm as a leg, the radius is the same as the tibia.  Basically, jsut like his longer leg and foot didn't develop right, the same happened in his arms but even more mild.  THe radial bones are a tad short but we will watch that for now.  But it caused his thumbs to become hypoplastic, and he is missing some ligaments.  This is why his thumbs have no strength and look like they dislocate when he moves them.  Heehee as I was writing stuff down on my phone - he kept saying if you google it you will see so, and so.  I finally told him that if our amputee Dr trusted him then so do we.  I jsut needed to write down the words for my husband LOL!

So Cav is between the B and C pictures

So, we are looking at tendon transfer surgery on both hands.  I also showed him Griffen's extra thumbs (cuz you so know God has a sense of humor LOL!)  We can do both boys on the same day.  The big question is should we do both of Cav's hands and be done or one at a time.  He has to do OT after they heal and this is where our insurance is lacking.

2:00 - Throw out the new splints

2:15 - Move a few halls down to see the amputee team.  I love the clinics but man it is overwhelming.  I am sure there were no less than 12 Dr's, therapists and prosthetists.  I lvoe this group - they rejoice with us at how far this boy of ours has come.  We got a few hints, they were amazed he had the knee for only 3 hours and was walking on his own, and were discussing at what age he can join the Children's ski team LOL!

X-rays to check alignment

**Cav wears his legs from the time he gets up (and momma remembers to get his socks) until bed.  They said they have never seen a bilateral amputee take to his prosthetics as well as Cav has.  I truly believe that this is because he was different without his legs in the orphanage.  And if I know anything, I know that my Chinese kids don't like to be singled out**

3:40 - finally, in the car and realize we jsut might have enough time to race back to the Springs, and see Tristan's wrestling match.

4:45 - walking into where the match is at and my phone starts dinging!  Yep, all the mom's and my hubby texting me to say he jsut won - dang!  We still went in, congratulated him in the hall and Cav got to show off his new knee to the biggest fan club!

Since daddy was home early we all went out to eat and really had a fun night.  

Cav's legs - 1 month

Yeah, I am a few days late but I wanted to share our miracle called Cav.

Since he is our son, I often forget how much of a miracle he is . . . and how much he influences those around us.  His amazing accomplishments really seem to hit people in a visceral way.  He is truly a testiment to God's amazing healing power.


SO a little look at our life and how his legs have changed his/ our lives.

He loves being upright especially at school!

  Being able to participate WITH his friends in a whole new way.

These are his cute little feet and piggies.  Our kids were so excited that he has a slit between his big toe and second toe so he can wear flip flops.

Of course we had to have an emergency visit with Mr Terry.

Cav's stumpies shrunk some from walking so much and we didn't realize we needed to watch for this and then add more socks throughout the day.

Luckily, our PT noticed and we got an appt.

Do you see that silver piece - yeah he busted his knee LOL

Luckily, we were still in Denver and so back to Mr. Terry

Roller chair races but I was to tired to stop them.  Besides he needs to learn to push with his leg.

We still are working on throwing and other things but look at that boy stand and balance!

AND CLIMB!!

Let me remind you he has NO feet, he can not feel with his feet where his is on the cargo net, he can't balance with his toes.  He has only had these legs for 1 month and still he amazes us!